September 7

Isla had her appointment at Hanger (the company that makes helmets) today. We met with the orthotist who measured her head and gave us an idea of the severity of her brachycephaly. They covered her head with this sock-type thing and then scanned it. I thought she would be really annoyed by that thing, but she did a good job and didn't cry at all. Here is what she looked like getting ready for the scan:
During the scan:And here is what her scan looked like on the computer:The funny thing is...her scan doesn't look all that bad. Daniel, the orthotist, and I all looked at it and were really surprised. The scan shows that it is flat in back and more triangular in shape. But in person, it appears to be much more severe. The orthotist thinks this is because the scan isn't quite measuring her head exactly where it is the flattest. Her head slopes up in the back (which is common with brachycephaly), and she thought that might be throwing off the scan a little bit.

To measure brachycephaly, they use what is called the cranial proportion index (CPI). I don't fully understand how it works, but they use a percentage to determine how proportion the head is. Normal is around 80%. Severe is 100%.

According to Isla's scan, her head measured at 94%. That seems pretty severe to me, but the orthotist assured us she is in the moderate range. Even if the scan isn't quite accurate and her head is worse than it shows, she still thought that Isla would be considered a moderate case. She also said that it is purely a cosmetic concern, in her opinion. ( I guess there are varying opinions about how this could possibly cause medical problems later in life if untreated).

So, basically, it is up to us as to whether we treat (i.e. get a helmet) her or not. We can leave her as she is and hope that her head rounds out on its own. Or we can get her a helmet, which will most definitely lead to a big improvement in the shape of her head.

I really just wanted the orthotist to tell us what to do. She didn't. Rather she repeatedly said that it was our choice whether we treated her or not. How do you know what to do? We don't know what will happen to her head as she grows? It is possible that it may round out and elongate and appear more normal on its own. Ot may stay flat in the back and wide in the front but not affect her forehead or facial features or appearance. I am perfectly fine with either of those options.

However, it might stay flat in the back and then cause problems in her appearance. Her forehead could bulge out more. Her head would most likely get wider and stick out above her ears. It could cause problems with asymmetric facial features, which could lead to eye and jaw problems. The window of opportunity to treat this bascially ends by 12 months. So if we don't do something in the next few months, then there will be nothing that we could do later in life. What if she really starts to look deformed because of this?

So...do we just go ahead with the hassle and expense of the helmet in order to avoid the possibility of future problems? Or do we just hold out and hope that everything will work itself out...or that it won't cause too many noticeable problems...or that she won't grow up and be mad at us for not fixing it when we had the chance?

Right now, the plan is to go back for another scan in 6 weeks. Then we will be able to see if it is improving, getting worse or staying the same. From that point, we will need to make a decision about the helmet.

We asked the orthotist what she would do if it was her own child. She said that if her child were to present with the same scan results and appearance as Isla, she would definitely treat her. I think for now, we agree with her. If we don't see improved results at the next scan, then we will move ahead with the helmet. If it is getting better, then we will re-evaluate and decide what the next step is. At least that is how we feel right now.

Throughout all this, we will continue to meet with our physical therapist. We will also have Isla's 4 month dr's appointment before the scan. I'm hoping to get input from both the therapist and our pediatrician about what they would recommend for us to do. I know that we are the parents, and we are supposed to be in charge. But I don't want to make this decision! I don't want to be a perfectionist who is trying to create a perfect child with a perfectly shaped head. I don't care if her head is a little flat or funny shaped. But I don't want to ignore this and then end up with more serious problems (both cosmetic and medical) later in life. I just don't know!!!!!!